This came up in the comments to https://cushingsbios.com/2018/11/17/jayne-in-the-media/
The question is
I dropped by this site because my friend’s daughter has Cushings and I wanted to learn more. Is there any chance that Cushings might be manageable or improvable in a way similar to what Izabella Wentz proposes for Hashimotos?
What do you think?
Krista shared her helpful doctor, Maria Fleseriu, in her bio.
| How would you rate your Helpful Doctor? | 5/5 |
| Your Doctor’s Name | Maria Fleseriu |
| Your Doctor’s Address | Street Address: 3303 SW Bond Ave City: Portland State / Province: Or Postal / Zip Code: 97239 |
| Your Doctor’s Phone Number | (541) 494-4314 |
| What are your Doctor’s Specialties? | Neuro-endocrinology |
| What are your Doctor’s Hospital Affiliations? | OHSU |
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Medically reviewed by Daniel More, MD
You may notice that your face appears puffy or more round on certain days. This can happen as your weight and hormones fluctuate or when you experience allergies or a temporary illness. However, if the puffiness persists or if your facial swelling is severe, this may be a sign of moon face—a condition that causes your face to become rounder due to fluid buildup.
Moon face causes swelling in your face as a result of excess fluid buildup. You may notice extra puffiness in your cheeks, forehead, and chin. When your facial features enlarge, it creates a round shape that mimics the look of the moon—hence the name, “moon face.”
It’s important to pay attention to the way your face feels. Sometimes, moon face is mild and not easily noticeable. But other times, moon face can be painful or affect your breathing. Keep track of any pain and swelling you’re experiencing. Before seeing a healthcare provider, it can also help to document the following:
These notes can help your healthcare provider understand the severity of your symptoms and recommend appropriate treatment options.
A variety of factors can cause moon face—ranging from mild everyday reactions to more serious conditions.
Underlying infections and medical conditions can cause facial swelling and increase your risk of moon face. These include:
Among the most common causes of moon face is Cushing’s syndrome—a condition that occurs when your body makes too much cortisol, which is commonly referred to as the “stress hormone.” One of the most common symptoms of Cushing’s syndrome is moon face, but you might also experience darkening of the skin, weight gain, and muscle weakness.
If your body doesn’t produce enough cortisol, your healthcare provider may prescribe corticosteroids. These anti-inflammatory drugs can also help treat several conditions such as arthritis, severe allergies, multiple sclerosis, lupus, certain kinds of cancer, and other conditions related to your lungs, skin, eyes, blood, kidneys, thyroid, stomach, or intestines.
One of the most common corticosteroids is Deltasone (prednisone). Excess amounts or long-term use of corticosteroids can cause moon face to occur.
Besides corticosteroids, other types of medication and medical treatment can also cause moon face. Specifically, you may develop moon face as a reaction to a blood transfusion or a range of medications, such as Bayer (aspirin) and certain types of antibiotics. You can also experience moon face after head, nose, or jaw surgery.
Both severe malnutrition (not eating enough to get the nutrients you need) and obesity may lead to moon face. Some people with malnutrition develop kwashiorkor—a condition that can lead to swelling of your arms, legs, and face. This can happen because not eating enough food or drinking enough water can cause low levels of fluid and force your body to retain excess salt, which can cause swelling.
People with obesity may also be more likely to develop moon face. It’s estimated that approximately three out of every four people with Cushing’s syndrome experience obesity. When Cushing’s syndrome causes excess weight on your body, you may also be at an increased risk of developing fat deposits in your face.
Other common causes of moon face include:
Because moon face is a symptom of other underlying health conditions, it’s best to consult a healthcare provider to understand what’s causing your facial swelling and learn about treatment options.
For example, if your moon face is the result of an injury, you might try using ice to reduce the swelling. In addition, propping your head up with extra pillows while you sleep may help improve fluid drainage and reduce swelling. But, if a condition like Cushing’s syndrome is causing moon face, medication or surgery may help improve facial swelling.
There isn’t one surefire way to prevent moon face—mostly because a variety of factors can cause symptoms to develop. If you are at risk or concerned about a particular cause of facial swelling, speak with your healthcare provider about your options. If you’re prescribed a corticosteroid, there are particular steps you can take to reduce your chances of developing moon face.
When taking a prescribed corticosteroid like prednisone, pay close attention to your symptoms and let your healthcare provider know early if you are developing any symptoms of Cushing’s syndrome, including moon face. The earlier they are able to recommend alternative treatment, the better your chances of preventing long-term swelling.
It’s important to seek care from your provider if you have specific symptoms associated with moon face, including:
If you seek medical care for moon face, your healthcare provider will likely begin your appointment by taking your medical history and performing a physical exam. They may also ask about:
Once they gather this information, your provider can order the necessary testing, understand the underlying cause of your symptoms, and offer treatment options for moon face.
Moon face is a condition that occurs when fluid builds up under your skin and causes facial swelling. Several factors can cause moon face, like reactions to medication or surgery, allergies, infections, weight changes, and underlying health conditions. If you have symptoms of moon face or notice your face getting puffy without a clear reason, talk to your provider. They can help you pinpoint the underlying cause and recommend treatment.
Adapted from https://www.yahoo.com/lifestyle/moon-face-180000163.html
From Stephanie’s bio
Muhammed Ahmed
Tanana Valley Clinic
Fairbanks
AK, 99701
Country: United States
Specialty: Endocrinology
Hospital Affiliations: Tanana Valley, Mayo Clinic
Comments: Dr. Ahmed is professional, thorough with his research, thoughtful, and thinks I’m his star Cushing’s patient (I’m his only Cushing’s patient).
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Cortisol is a hormone which produced by the adrenal gland (cortex) to control blood sugar. The production of cortisol is triggered by the pituitary hormone ACTH. Cortisol is a glucocorticoid which stimulates an increase in blood glucose. Cortisol will also stimulate the release of amino acids from muscle tissue and fatty acids from adipose tissue. The amino acids are then converted in the liver to glucose (for use by the brain). The fatty acids can be used by skeletal muscles for energy (rather than glucose) thereby freeing up glucose for selective utilization by the brain. Cortisol levels are often measured to evaluate the function of the pituitary or adrenal glands. Some of the cortisol is metabolized by the liver to produce 17 hydroxycorticosteroids, which is then excreted in the urine.
The primary stress hormone. Cortisol is the major natural GLUCOCORTICOID (GC) in humans.
Synthetic cortisol, also known as hydrocortisone, is used as a drug mainly to fight allergies and inflammation.
Physiology
The amount of cortisol present in the serum undergoes diurnal variation, with the highest levels present in the early morning, and lower levels in the evening, several hours after the onset of sleep. Information about the light/dark cycle is transmitted from the retina to the paired suprachiasmatic nuclei in the hypothalamus. Changed patterns of the serum cortisol levels have been observed in connection with abnormal ACTH levels, clinical depression, psychological stress, and such physiological stressors as hypoglycemia, illness, fever, trauma, surgery, fear, pain, physical exertion or extremes of temperature. There is also significant individual variation, although a given person tends to have consistent rhythms.Cortisol also inhibits the secretion of corticotropin releasing hormone (CRH), resulting in feedback inhibition of ACTH secretion. Some researchers believe that this normal feedback system may break down when animals are exposed to chronic stress.
In normal release, cortisol has widespread actions which help restore homeostasis after stress. It acts as a physiological antagonist to insulin by promoting gluconeogenesis, breakdown of lipids, and proteins, and mobilization of extrahepatic amino acids and ketone bodies. This leads to increased blood glucose concentrations, resulting in increased glycogen formation in the liver (Freeman, 2002). It also increases blood pressure. In addition, immune and inflammatory cells have their responses to stress attenuated by cortisol, and the hormone thus lowers the activity of the immune system. Bone formation is also lowered by cortisol.
These normal endogenous functions are the basis for the physiological consequences of chronic stress – prolonged cortisol secretion causes muscle wastage, hyperglycemia, and suppresses immune / inflammatory responses. The same consequences arise from long-term use of glucocorticoid drugs.
Also, long-term exposure to cortisol results in damage to cells in the hippocampus. This damage results in impaired learning. However, short-term exposure of cortisol helps to create memories; this is the proposed mechanism for storage of flash bulb memories.
Pharmacology
As an oral or injectable drug, cortisol is also known as hydrocortisone. It is used as an immunosuppressive drug, given by injection in the treatment of severe allergic reactions such as anaphylaxis and angioedema, in place of prednisolone in patients who need steroid treatment but cannot take oral medication, and peri-operatively in patients on long-term steroid treatment to prevent an Addisonian crisis.It is given by topical application for its anti-inflammatory effect in allergic rashes, eczema and certain other inflammatory conditions. It may also be injected into inflamed joints resulting from diseases such as gout.
Compared to prednisolone, hydrocortisone is about 1/4th the strength. Dexamethasone is about 40 times stronger than hydrocortisone. For side effects, see corticosteroid and prednisolone.
A certain amount of cortisol is necessary for life. Without cortisol even a small amount of stress will kill you. Addison’s disease is a disease which causes low cortisol levels, and which is treated by cortisol replacement therapy.
Cortisol…
- helps maintain blood pressure and cardiovascular function;
- helps slow the immune system’s inflammatory response;
- helps balance the effects of insulin in breaking down sugar for energy; and
- helps regulate the metabolism of proteins, carbohydrates, and fats.
Personal Stories:
From MaryO’s bio: (At the NIH in October 1987) The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.)
Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrollable bleeding from a major artery.
The test did show where the tumor probably was located.
Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery…
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From Karen’s Story: https://cushingsbios.com/2016/11/18/doc-karen-pituitary-and-bla-bio/
At that time, there was evidence of a pit tumor but it wasn’t showing up on an MRI. So, I had my IPSS scheduled. An IPSS stands for Inferior Petrosal Sinus Sampling. It is done because 60 % of Cushing’s based pituitary tumors are so small that they do not show up on an MRI. Non Cushing’s experts do not know this so they often blow patients off, even after the labs show a high level of ACTH in the brain through blood work. An overproduction of the hormone ACTH from the pituitary communicates to the adrenal glands to overproduce cortisol. Well, the IPSS procedure is where they put catheters up through your groin through your body up into your head to draw samples to basically see which side of your pituitary the extra hormone is coming from, thus indicating where the tumor is. U of C is the only place in IL that does it.
…
I was scheduled to get an IPSS at U of C on June 28th, 2011 to locate the tumor. Two days after the IPSS, I began having spontaneous blackouts and ended up in the hospital for 6 days. The docs out here had no clue what was happening and I was having between 4-7 blackouts a day! My life was in danger and they were not helping me! We don’t know why, but the IPSS triggered something! But, no one wanted to be accountable so they told me the passing out, which I was not doing before, was all in my head being triggered by psychological issues. They did run many tests. But, they were all the wrong tests. I say all the time; it’s like going into Subway and ordering a turkey sandwich and giving them money and getting a tuna sandwich. You would be mad! What if they told you, “We gave you a sandwich!” Even if they were to give you a dozen sandwiches; if it wasn’t turkey, it wouldn’t be the right one. This is how I feel about these tests that they ran and said were all “normal”. The doctors kept telling us that they ran all of these tests so they could cover themselves. Yet, they were not looking at the right things, even though, I (the patient) kept telling them that this was an endocrine issue and had something to do with my tumor! Well, guess how good God is?!!!!
…
Fast forward, I ended up in the hospital with these blackouts after my IPSS. The doctors, including MY local endocrinologist told me there was no medical evidence for my blackouts. In fact, he told the entire treatment team that he even doubted if I even had a tumor! However, this is the same man who referred me for the IPSS in the first place! I was literally dying and no one was helping me! We reached out to Dr. Ludlam in Seattle and told him of the situation. He told me he knew exactly what was going on. For some reason, there was a change in my brain tumor activity that happened after my IPSS. No one, to this day, has been able to answer the question as to whether the IPSS caused the change in tumor activity. The tumor, for some reason, began shutting itself on and off. When it would shut off, my cortisol would drop and would put me in a state of adrenal insufficiency, causing these blackouts!
Dr. Ludlam said as soon as we were discharged, we needed to fly out to Seattle so that he could help me! The hospital discharged me in worse condition then when I came in. I had a blackout an hour after discharge! But get this…The DAY the hospital sent me home saying that I did not have a pit tumor, my IPSS results were waiting for me! EVIDENCE OF TUMOR ON THE LEFT SIDE OF MY PITUITARY GLAND!!!
_____
From Kirsty: https://cushingsbios.com/2013/06/25/kirsty-kirstymnz-ectopic-adrenal-bio/
The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake – I could actually feel them moving around in my head.)
This test concluded that my Cushing’s was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was “where is the tumor?”
_____
Find other bios with which mention this test at https://cushingsbios.com/tag/ipss/
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This topic on these message boards: https://cushings.invisionzone.com/forum/54-css-ct-ipss-ivp-mri-np-59-scan-octreoscan-pss-sonogram-ultrasound/
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Thoughts from Dr. James Findling: https://cushieblogger.com/2019/03/24/cushings-syndrome-expert-a-standout-in-clinical-practice/
Another defining moment in my career from a research perspective was when I was a fellow, I had to do a project. We were seeing a lot of patients with Cushing’s — of course, that’s why I went there — and in those days we had no good imaging. There were no CT scans, no MRI, there was no way to image the pituitary gland to find out whether there was a tumor. By the late ’70s it became obvious that some patients with Cushing’s syndrome didn’t have pituitary tumors. They had tumors in their lungs and other places, and there was no good way of sorting these patients from the pituitary patients.
My mentor at UCSF, Blake Tyrrell, MD, had the idea of sampling from the jugular vein to see if there was a gradient across the pituitary. I took the project up because I didn’t think this is going to be helpful due to there being too much venous admixture in the jugular vein from other sources of cerebral venous drainage. We went into the radiology suite to do the first patient. As I was sampling blood from the peripheral veins, the interventional radiologist, David Norman, MD, says, “Would you like to sample the inferior petrosal sinus?” I said, “Why not? It sounds like a good idea to me.” That turned out to be helpful. We then studied several patients, and it eventually went to publication. Now everybody acknowledges it is necessary, maybe not in all patients with Cushing’s, but in many patients with Cushing’s to separate pituitary from nonpituitary Cushing’s syndrome.
__________
Official information
Patient information from Canterbury Health Limited Endocrine Services
INFERIOR PETROSAL SINUS SAMPLING WITH CRH STIMULATION
Introduction
You have been diagnosed with Cushing’s syndrome which results from excessive production of the hormone cortisol, made by the adrenal glands. In your case, the adrenal glands are being driven by excessive amounts of another hormone called ACTH. This test is to determine where that ACTH is coming from. Constant high levels of ACTH are usually caused by a tumor. Approximately 80% of cases are tumors of the pituitary gland while the remainder may occur in the lung, pancreas and other sites (known as “ectopic” sites).
This test relies on the fact that if the source of your high ACTH is the pituitary gland blood levels taken from very near the gland will be higher than the blood level in an arm vein. Pituitary gland tumors are often tiny and can’t be seen even with the most modern scanners. This test will help your endocrinologist to know with almost 100% certainty whether the pituitary gland is the source or if a search is needed elsewhere (for example in the lungs or abdomen). This guides treatment, for example the recommendation for Pituitary surgery.
Procedure
You are allowed water only from midnight the night before (nothing else to eat or drink). You will be given a light sedative, but will be awake during the procedure. You will be taken to the Radiology Department where the procedure will take place. The radiologist will place some local anesthetic into the groin on each side over the main vein that drains blood from each leg. Then a fine bore catheter will be passed up the vein, past the heart and into the major vein in the neck (the jugular vein). From there it is passed into a smaller vein that drains blood directly from the pituitary gland, known as the inferior petrosal sinus. The procedure is repeated for the other side. X-ray screening guides the radiologist to know where the catheters are positioned. A small butterfly needle is inserted into an arm vein.
Once the catheters are in place, blood samples will be taken from the right and left petrosal sinus, and an arm vein at exactly the same time. After two baseline samples, a hormone called CRH is injected into the arm vein. This increases ACTH when a pituitary gland tumor is present, but has no effect on ectopic ACTH production. Further blood samples are taken for another 10 to 15 minutes, then the catheters are withdrawn. Pressure is applied to the groins to minimize bruising. Often sampling is continued from the arm vein only, for a total of 90 minutes. You will have to remain lying on your back for at least 2 hours afterwards.
Risks
This procedure is very safe when performed by an experienced radiologist. Rarely, there have been reports of people having a stroke at the time of this procedure but this was related to a catheter of faulty design which is now no longer used. Bruising, which is common in Cushing’s syndrome, may occur after the catheters are pulled out. Some people notice flushing of the face after the CRH and rarely it can result in a fall in blood pressure.
From: http://www.pituitarycenter.com/html/article1.html
INFERIOR PETROSAL SINUS SAMPLING
Patients who are suspected of having a pituitary tumor resulting in Cushing’s syndrome may be referred for inferior petrosal sinus sampling if findings on MRI examination of the pituitary did not reveal a tumor or are inconclusive.
The inferior petrosal sinus sampling procedure is performed in the radiology department. With the patient on the angiography table both groin regions are partially shaved, sterilized, and a local anesthetic is injected into the skin to provide pain relief. A tiny incision is made within the skin and a needle is inserted to puncture the femoral vein which drains blood from the leg. A small catheter is then inserted into the vein and flushed with an intravenous solution. Longer catheters are passed into the shorter catheters and advanced through the large veins traversing the torso into the neck and then into the base of the skull. Thereafter, a microcatheter is advanced through each of these larger guiding catheters and threaded into the inferior petrosal sinuses which lie along the internal aspect of the skull base and drain blood from the pituitary gland. Once these microcatheters have been positioned, contrast dye is injected and X-rays are taken to verify their position in the inferior petrosal sinuses. Next, blood samples are collected from both catheters in the inferior petrosal sinuses and from a peripheral (usually arm) vein. Thereafter, corticotropin-releasing hormone is administered through the peripheral vein. Repeat blood samples are drawn 2, 5, and 10 minutes after the injection. Additional X-rays are taken to confirm that the catheters were not dislodged from their site during the sampling procedure. Thereafter, the catheters are removed and direct pressure is applied to the groin region to decrease the likelihood of bruising. Patients are observed for 4 hours following the procedure to ensure that no bleeding from the femoral vein puncture sites will occur. Normal non-strenuous activity may be resumed 48 hours after the procedure.
Sedatives and pain relievers may be administered during the procedure as necessary. A blood thinner might be used depending on the patient’s anatomy and the clinical suspicion of developing a blood clot. If a blood thinner is used, this may be counteracted with medication at the conclusion of the procedure to ensure that normal blood clotting resumes while removing the catheters. Overall, the inferior petrosal sinus sampling procedure involves minimal discomfort. The risks of the procedure are small. X-rays are used but the radiation doses are minimized. Infection is controlled by using sterile technique. Some patients might have an unexpected allergic reaction to the dye used during the study. A bruise may develop within the groin. Although rare, blood clots have developed in the groin veins following this procedure. Again, steps are taken to minimize the likelihood of each and every one of these complications.
ACTH levels are measured in each of the blood samples obtained during the procedure. The ratios between the petrosal sinus sampling and the peripheral vein samples are compared. The results are used to determine whether ACTH production is due to either a pituitary or a non-pituitary source.
___
From: http://www.mc.vanderbilt.edu/pituitarycenter/html/article1.html
Patients who are suspected of having a pituitary tumor resulting in Cushing’s syndrome may be referred for inferior petrosal sinus sampling if findings on MRI examination of the pituitary did not reveal a tumor or are inconclusive.
The inferior petrosal sinus sampling procedure is performed in the radiology department. With the patient on the angiography table both groin regions are partially shaved, sterilized, and a local anesthetic is injected into the skin to provide pain relief. A tiny incision is made within the skin and a needle is inserted to puncture the femoral vein which drains blood from the leg. A small catheter is then inserted into the vein and flushed with an intravenous solution. Longer catheters are passed into the shorter catheters and advanced through the large veins traversing the torso into the neck and then into the base of the skull. Thereafter, a microcatheter is advanced through each of these larger guiding catheters and threaded into the inferior petrosal sinuses which lie along the internal aspect of the skull base and drain blood from the pituitary gland. Once these microcatheters have been positioned, contrast dye is injected and X-rays are taken to verify their position in the inferior petrosal sinuses. Next, blood samples are collected from both catheters in the inferior petrosal sinuses and from a peripheral (usually arm) vein. Thereafter, corticotropin-releasing hormone is administered through the peripheral vein. Repeat blood samples are drawn 2, 5, and 10 minutes after the injection. Additional X-rays are taken to confirm that the catheters were not dislodged from their site during the sampling procedure. Thereafter, the catheters are removed and direct pressure is applied to the groin region to decrease the likelihood of bruising. Patients are observed for 4 hours following the procedure to ensure that no bleeding from the femoral vein puncture sites will occur. Normal non-strenuous activity may be resumed 48 hours after the procedure.
Sedatives and pain relievers may be administered during the procedure as necessary. A blood thinner might be used depending on the patient’s anatomy and the clinical suspicion of developing a blood clot. If a blood thinner is used, this may be counteracted with medication at the conclusion of the procedure to ensure that normal blood clotting resumes while removing the catheters. Overall, the inferior petrosal sinus sampling procedure involves minimal discomfort. The risks of the procedure are small. X-rays are used but the radiation doses are minimized. Infection is controlled by using sterile technique. Some patients might have an unexpected allergic reaction to the dye used during the study. A bruise may develop within the groin. Although rare, blood clots have developed in the groin veins following this procedure. Again, steps are taken to minimize the likelihood of each and every one of these complications.
ACTH levels are measured in each of the blood samples obtained during the procedure. The ratios between the petrosal sinus sampling and the peripheral vein samples are compared. The results are used to determine whether ACTH production is due to either a pituitary or a non-pituitary source.
___
From https://www.uclahealth.org/radiology/interventional-neuroradiology/inferior-petrosal-sinus-sampling
The IPSS test is done in some patients to identify if there is too much ACTH is causing the excess production of cortisol, and where it is coming from.
Typically under general anesthesia, we place small tubes (catheters) into the femoral veins (the main vein draining the legs) at the level of the groin. From there, under X-ray guidance, we navigate those catheters to the main veins which drain the Pituitary gland. These are the inferior petrosal sinuses (right and left). We then draw samples from those veins and the main vein of the abdomen and test those samples for ACTH. We also take timed samples after giving a dose of medication which would normally stimulate the production of ACTH to improve the sensitivity of the test.
When we get the results, the different levels of ACTH may help the endocrinologist determine where the tumor is located that is causing the adrenal gland to produce the excess cortisol. If it is from the Pituitary gland, any difference between the right and left samples may help the surgeon determine the surgical plan to remove the tumor yet preserve the normal Pituitary gland.
Example of testing results:
| Time | Right IPS | Left IPS | Inf Vena Cava | Cortisol |
|---|---|---|---|---|
| Baseline 1 09:32 | 40 pg/ml | 17 | 18 | 25 mcg/dl |
| Baseline 2 09:34 | 45 | 18 | 15 | 24 |
| DDAVP inj 09:38 | ||||
| Post 2min 09:40 | 72 | 21 | 18 | |
| Post 5min 09:43 | 157 | 20 | 19 | |
| Post 10min 09:48 | 161 | 30 | 25 | |
| Post 15min 09:53 | 162 | 33 | 26 | |
| Post 30min 10:08 | 124 | 32 | 29 | 30 |
This example shows elevation of ACTH in the right inferior petrosal sinus, likely indicating a tumor in the right side of the pituitary gland causing Cushing’s Disease.
Picture of contrast injection of the inferior petrosal sinuses:
Tips of the catheters in the inferior petrosal sinuses.
Caused by excessive exposure to the hormone cortisol, endogenous Cushing syndrome (CS) is difficult to diagnose. Currently available biochemical tests that assess cortisol production have limited diagnostic specificity and sensitivity, and their performance can vary depending on the patient, according to a review article in Current Opinion in Endocrinology, Diabetes and Obesity.
“Whether performed on blood, urine, saliva, or hair, all biochemical tests for CS have advantages and disadvantages. It is therefore essential to select them based on the individual characteristics of the patient and the stage of the disease in order to improve their diagnostic performance,” wrote corresponding author Antoine Tabarin, MD, and coauthor Amandine Ferriere, MD, of the University Hospital of Bordeaux in Pessac, France.
The Endocrine Society recommends initial screening of patients with suspected CS using 24-hour urinary-free cortisol (UFC), late-night salivary cortisol (LNSC), or the overnight dexamethasone suppression test (ONDST). To avoid false negatives from variability in cortisol production, UFC and LNSC tests should be performed twice.
Among the three screening options, meta-analysis findings suggest comparable diagnostic performance, the authors reported.
“However, they also concluded that these investigations should not be used indiscriminately,” the review continued, “and should be selected according to various circumstances.”
ONDST results can be affected by medications, age, a history of bariatric surgery, and even individual differences in dexamethasone metabolism, according to the review. UFC requires patient education and a complete 24-hour urine collection. LNSC testing, which biochemically assesses the loss of circadian rhythmicity consistent in CS, may not be appropriate for people with highly variable sleep schedules, including shift workers.
For early detection of Cushing disease (CD) recurrence after pituitary surgery, LNSC is the recommended first-line procedure for biochemical follow-up. LNSC is also the tool of choice for monitoring patients with CS treated with medication, the article reported.
For patients with adrenocorticotropic hormone (ACTH)-dependent CS, UFC offers high accuracy for assessing the likelihood of CD and ectopic adrenocorticotropin. However, for the diagnosis of cyclical or intermittent CS, repeat UFC tests are “cumbersome and nearly impossible,” the authors wrote.
LNSC, on the other hand, allows for frequent daily assessment of cortisol secretion which is helpful for identifying cyclical CS. Similarly, measurements of cortisol and cortisone levels in the hair can assess mid- to long-term tissular exposure to cortisol and signal cyclical CS as well, the review explained.
Ferriere A, et al. Curr Opin Endocrinol Diabetes Obes. 2025;32(5):233-239. doi:10.1097/MED.0000000000000923
Today is the 38th anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 38 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
I took growth hormone for a while.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.
In 2017 I went back on it (Omnitrope this time) in late June. Hooray! I still don’t know if it’s going to work but I have high hopes. I am posting some of how that’s going here.
During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.
In the last couple years, I’ve developed ongoing knee issues. Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee. September 12, 2018 I did get that knee injection (Kenalog) and it’s been one of the best things I ever did. I’m not looking forward to telling my endo!
I finally got both knees replaced. The left in 2023, the right on February 3 of this year
I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!
My mom has moved in with us, bring some challenges…
In early May of this year I got a cortisone injection in my right thumb. Hopefully, this won’t turn into anything.
But, this is a post about Giving Thanks. The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH. Unfortunately, Dr. Oldfield died in the last year.
I’m thankful for Dr. Harvey Cushing and all the work he did. Otherwise, I might be the fat lady in Ringling Brothers now.
To be continued in the following days here at http://www.maryo.co/
Myth: Even though you are chronically ill, you should have the same amount of energy every day. “You look SO good and you went to that party last month! Why can’t you come to MY party?!” When you say you are not well enough to do something, you are just making excuses. You could do it, just like you did that other thing; you are just choosing not to!
Fact: You may have heard me talk about “The Spoon Theory”. It was created by someone named Christine Miserandino, to explain the experience of someone with chronic illness in terms of using energy to live and to complete tasks every day. Though the myth assumes that one should have the same amount of energy all the time; the fact is that energy levels fluctuate and people who are chronically ill must make conscious decisions about what they can spend their energy on.
Christine Miserandino (2010) uses the spoon theory to answer the question, “What does it feel like to be sick?” The spoons serve as a symbol for resources available and energy spent to get through every moment of every day. Miserandino states that “The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to”. Most people who get sick feel a loss of a life they once knew. When you are healthy, you expect to have a never ending supply of spoons. But, when you are not well, you need to count your spoons to keep track and you can never forget about it or take it for granted. Each task costs a spoon and each spoon is not to be taken for granted. Miserandino (2010) asks, “Do you know how many spoons people waste every day?”
Patients use the metaphor of a banking system. In this system, patients must make a withdrawal of a spoon every time they complete a task. Cushing’s and Adrenal Insufficiency patients talk about the “Cortisol Bank” metaphor. The concept is the same and the idea is that certain stressors and/or tasks cause one’s body to make a cortisol withdrawal from the body. Bad things happen when there is a cortisol deficit, meaning that there is not enough cortisol in the body for one to live everyday because of the amount of cortisol that has already been used up. If a person continues to draw from the bank on an account that is already negative, the situation can become worse and worse as each day passes.
Something needs to happen in order to start making appropriate deposits. This can include, taking more medication (stress dosing or an emergency shot), resting, getting adequate physical and emotional support and help, and saying “NO!”. Even when in a deficit, many patients have a difficult time saying “no” to an invitation to an event, completing a task, or engaging someone in a way that will use up more energy because of their fear of their loved one’s reactions. Much of the time, this fear is warranted because of the actual reactions they have received. Ever heard, “But you volunteered for the bake sale last week! You must be better! Why can’t you come to church this week?!”. You may have heard something similar.
It is important for loved ones to understand the amount of “spoons” it takes for a chronically ill person just to get through every single day. EVERYTHING costs spoons! The amount of spoons paid by each person varies from person to person. It all depends on that individual’s situation, body, level of illness, etc. What is common for all, though, is that spoons must be used and eventually those spoons run out. In order to avoid becoming sick or to recuperate from getting sick, the chronically ill patient must evaluate how he/she will use spoons and what tasks can be feasibly completed that day or week. Please understand that when the chronically ill patient says, “YES” to you; he/she is making a conscious choice to use up spoons to meet your need, request, or demand. Talking on the phone, going out to lunch, making dinner, coming to your event all required a sacrifice of another task that day or week. Your friend may have come to lunch with you but that required that she skipped washing the dishes that day or washing her hair, or is even giving up doing something important the next day. Instead of being angry at your friend, please consider why the request is denied at times.
Refer to the attached picture. This is not an exact science but gives some idea of the spoon bank. If you have time, try doing this exercise: Lay out 8-12 physical spoons. As you complete certain tasks throughout the day, use this chart to subtract spoons from your pile.
Each and every thing requires a spoon. Taking a shower, washing your hair, cooking, cleaning, watching a movie, going out to lunch, working, writing this post (Ha)! When you are done with your day, notice how many spoons you have left. Observe your feelings after this exercise. You can even do it for a week. Lay out a certain amount of spoons for every day for seven days. If you go into a deficit, borrow spoons from the following day. However, if you do borrow spoons; you must take away a task that you WERE planning to originally do that day. Notice what happens and notice how you feel at the end of the week.
You can view “The Spoon Theory” in its entirety at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Can you think of any other tasks that are not on this chart? Help our friends who are doing the activity. List those tasks and assign how many spoons each task will require.
Spoon Bank
Get out of bed- 1 Spoon
Shower- 2 Spoons
Attend Special Event- 5 Spoons
Go out for Coffee- 4 Spoons
Drive- 4 Spoons
Make a Phone Call- 3 Spoons
Work- 5 spoons
Play Games-3 Spoons
Clean the House- 5 Spoons
Have a Meal- 2 Spoons
Walk the Dog- 4 Spoons
Study- 5 Spoons
Watch TV- 3 Spoons
Ironing- 5 Spoons
Exercise- 4 Spoons
Shopping- 4 Spoons
Read- 2 Spoons
Catch Public Transport- 4 Spoons
Cook- 4 Spoons
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The Case Records of the Mayo Clinic Florida Neurosurgery featured an endoscopic transsphenoidal approach for a pituitary tumor resection.